Medical challenges prompt parent to serve as advocate for others

When three of her children were diagnosed with rare auto-immune disease, Kerry Henrikson wouldn't give up

Kerry Henrikson, an advocate for parents whose children have contracted a rare autoimmune disease, shows drawings done by her son before (left) and after his treatment.

Imagine one of your young children quite suddenly begin to exhibit symptoms of Obsessive Compulsive Disorder as well as mood changes, sleep disturbances, even episodes of severe anxiety.

And no one will listen to you. No one believes what you believe is an underlying problem.

If your name is Kerry Henrikson, you don’t have to wonder. It’s a reality for the mother of three children, now 9, 8 and 5—two girls and a boy, the middle child who was eventually diagnosed with what is now called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

A video interview of Kerry Henrikson and her story can be seen this Wednesday on TVCOGECO as Barry Wright, host of “Wright to the Point,” takes up the issue.

The shortened form of the disease—PANDAS—is the simple part. But the disease itself, often left undiagnosed or, perhaps worse, misdiagnosed or ignored by some medical doctors who at one point (and even today) say they don’t believe it exists, is very real and perhaps not so rare after all.

And now Henrikson, who works as a child and youth worker associated with the Women’s Interval Home, is doing what she can so that parents faced with similar circumstances have the help they need to bring some normalcy into the lives of their own children.

But it’s no picnic. Henrikson leads an Ontario-wide support group of parents some four years after her son, who was four when he began exhibiting symptoms of the disease. Now her other children, two daughters age 9 and 5, have also demonstrated symptoms and undergo regular treatment.

Locally, Henrikson has two goals: to spread awareness of PANDAS, which can be triggered with the presence of the stretptococcus virus, and to help parents get the help they need to do something for their children.

This is no easy thing. The strep virus is said (by the U.S. National Institute of Mental Health) to be a very ancient organism which survives in its human host by hiding from the immune system as long as possible, putting molecules on its cell wall that look nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues, it allows the strep bacteria to evade detection for a time.

Henrikson admits it was, and continues to be a struggle to have a normal life with her children, although she is doing what she can through balancing her workload and making sure her children get the care they need.

And now, with her leadership role in the issue (she hosts a website (www.pandaspansontario.org) she has by default become one of the leading supports for parents faced with the same challenges with which we continues to deal.

As part of an effort to fund the awareness effort, Henrikson is working with Eclipse Bar and Grill, which operates an eatery that operates out of the Union Hall on Devine Street and Indian and which is hosting a meat raffle every Friday night beginning this week. She is also working with a small team to apply for charitable status so the effort can become sustainable.

Henrikson says she wants to help other parents who are facing what she did when no one would believe or support her efforts. And even now that her children are receiving effective treatment, there are others—perhaps 1 in every 200 children—who are at risk.

A video interview of Kerry Henrikson and her story can be seen this Wednesday on TVCOGECO as Barry Wright, host of “Wright to the Point,” takes up the issue.

A link to the PANDAS/PANS Facebook page is https://www.facebook.com/ppontario.org

Kerry Henrikson can be reached by (519) 381-7120.

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